“I’d love to start my own care home.”
Charlotte is 50. She works at a community centre and has been there for the last sixteen years. Her mother is 83, frail and getting closer to the end of her life. Charlotte’s mother was diagnosed with cancer at 80 and is now clear of the disease following chemotherapy and surgery. Her biggest challenge now is severe arthritis. She has been unable to walk for the past five months and struggles to get out of bed. Charlotte’s sister has always lived with her mother and is now her main carer. Charlotte visits every day for lunch, helping with many of the practical things.
Fear of losing control
Charlotte’s mother is a strong woman who is used to taking care of herself. It is hard for her to accept that she needs the help of others. As she is slowly becoming more dependent, she fears losing control and her sense of her self.
“My Mum doesn’t want you to know her business. My sister is a carer, but doesn’t get any carer’s allowance! She doesn’t want to apply for it. It would mean my Mum giving my sister her details to go and apply for it, and my Mum won’t have it. She won’t give out any of her personal information. It’s not like you have a million pounds Mum, you’ve got nothing!...There’s so much she could be part of in Southwark, so many benefits and activities. She’s missing out on all this, because she has to put in her bank account details for this and she just refuses! My mom doesn’t want people to know her business… She doesn’t want to lose control, it’s her lifeline.”
”Where my Mum lives is no good - it’s not suitable for her. The real problem is that the house has stairs, everything is upstairs. It’s a nightmare. My family won’t address it - they’ve lived there for so long. Just to get her up, give her a bath takes so much effort... She should be cared for in a proper home. But my Mum just doesn’t want to leave her place. As it is now, she would need a stair lift, a wet room put in... Now that she can’t walk, it’s a whole bigger game. It’s heartbreaking, she’s not the woman that she was. It’s hard for you to have to put your foot down, and say you’re not in control anymore, you’ll have to let us take care of you. But then she’ll say: ‘Sod off!’. I can’t intervene that much, she doesn’t live with me. It makes me feel guilty I don’t see that much of my Mum. But I work full-time and have my own family I have to take care of.”
Who is the expert in care?
Charlotte and her sister haven’t had good experiences with professional carers. They rely on additional support while Charlotte’s sister is at work, but they find this very unsatisfactory. The carers make them feel like they are just getting a job done. Everything feels very transactional. There is often not much personal connection, or effort to build relationships.
“Some carers are lovely, but some are just so… All they’ll do is sign the book, say they’re late for the next one and don’t do nothing! Sometimes they don’t even turn up. A couple are absolutely horrible. Mum will tell them off constantly. These two big women, when they lift her up they really hurt her. And when my mum says so, they just laugh at her and say: ‘you’re too skinny!’ My sister’s complained many times... She complained to the company, but then they sent the same one back again!”
”My Mum is getting incontinent. We need pads for her.. she needs large pads, but they only want to give us small ones. They came to measure her, just to tell us what size pads she really needs… These smaller ones come quite tight around her belly. And she’s sitting down all day so the bigger ones will be fine - just take my sister’s word for it… we probably know better what pads she needs! All these practical things take up so much time... Time we could spend with each other.”
“The consultant we spoke to said that she shouldn’t be resuscitated. He said it’s down to him to decide. Just because she’s losing her mind, you’re gonna kill her? I said to him: If my Mum has a heart attack, I want you to do anything you can to bring her back to life. When I spoke with my Mum about this, she said: ‘I’ll come back, I won’t die!’ My Mum may not go out and walk about, but she’s got full control of who she is, of her life, her money.”
Preparing is accepting
When the end is unclear, it’s difficult to accept that it’s coming. This makes it hard to know when and how to prepare for it. Charlotte tries to talk to her mum about practical things that need to happen, such as paying for the funeral. Apart from practical things, Charlotte and her sister don’t talk about how they’re feeling and what it means to care for a mother who is deteriorating. They’re just not that kind of family.
”It drives me mad! How are you supposed to achieve anything? My Mum doesn’t want to talk about anything. It has to happen, because she could die at any moment! At this age you just don’t know. She’s recovering from cancer, but has a bunch of other things and is in and out of the hospital. Sometimes, I would just like to take her money and pay for the funeral. If she dies, I don’t have the money to pay for it, and neither does my sister. And if Mum passes away away, we can’t access her bank account. When I talk to her about this, she’ll say: ‘You don’t need to know how much money I’ve got!”
”My sister and I don’t really talk, we just get on with it. The only things we talk about are practical, we’re worried about the finance, sorting out the funeral, that sort of thing. We want to have it the way she wants, but when we try to talk with Mum about it, she’ll say ‘I’m not going anywhere!’ Or sometimes she’ll say ‘just put me in a basket and throw me in the Thames.’ Then I say ‘no, because I’m gonna stuff ya!’”
Isolation is deterioration
Charlotte’s mother has not left her bed for the last four months. She used to be a very active woman, but losing her physical abilities has drained her motivation for life.
“She has sort of given up so to speak. It’s very sad. She’s got so skinny, she is so fragile. It’s a shame, she’s got so much going for her! My mum loves dancing and all that. But she’s forgetting things now… I just want to know why have you given up Mum? You’re forgetting how to use your body! Just wanna shake her! ‘What are you doing!’”
”You’re missing out on stuff Mum! I want to take her to the community centre I work at. All these events that are happening, she could spend every day here, chatting with others. But my mum will say: ‘I don’t wanna talk to all them old people…’”